Life went sideways for our family this spring. Our son, Sam, turned four and was shortly thereafter diagnosed with Juvenile Dermatomyositis (JDMS).
JDMS is a rare auto-immune condition which affects 3 children in a million. It is a disease where the immune system attacks blood vessels throughout the body, causing inflammation in the skin (rash) and muscles (weakness). Sam could only run about 10 paces, needed assistance getting into the car, and had difficulty swallowing when blood work confirmed the diagnosis. There is no cure, but some children can go into permanent remission with 2-3 years of anti-inflammatory steroid treatments. He is a patient of the amazing team of Pediatric Rheumatologists at BC Children’s Hospital.
Sam has responded beautifully to his treatments and has regained nearly full strength. It is difficult to give so much medicine to a child but we have seen the benefits. Prior to modern steroid treatments, 1/3 of children with JDMS died and 1/3 were left severely handicapped.
Flash forward five months to August, 2007. Sam tells my husband and me that he wants to do the “Run for the Ferry” with me. We think, why not? The doctors have told us to follow Sam’s lead when it comes to exercise- not to push him but to let him do what he’s comfortable with. I picture a casual, long drawn out race with many stops and perhaps a turn-around in the meadow.
What we got was something that went like this: During the warm up Sam is very serious- we stretch with our friends Jenny and Matt and he tries to follow along with Fawn. I notice that Stu and Molly (also four) are running and Stu and I tease each other about whose kid will be faster with feigned American competitiveness. The race begins. Sam and I cross the start line and run past his Dad who is filming the race. Sam is running with a huge smile and the utmost enthusiasm. Next, we go past the food table where his amazing caregiver, Fabiola, is cutting bananas and orange slices for the runners. He waves and he tells me “I’m going to beat Fabiola”. We hit the big hill into Deep Bay. “We can walk this big hill” I say. “My muscles are strong” says Sam. Next we go past his preschool teacher, Lyn who is a race marshal. She cheers him on with wild abandon. Sam says, “I’m going to beat Lyn”. I say, “Yup… I think you will”. We pass another volunteer, Jeff. Sam runs right up to him and zips by, showing off. Sam says “I’m going to beat Quinn’s daddy”. I say, “I think you’re right”.
Then, we enter the trails. We run through the meadow and I am starting to freak out that Sam hasn’t walked yet. He is running a really steady pace, not sprinting and slowing, just nice and even. We pass the 2K marker near the fish hatchery. He’s still running. He peeks in the window at the hatchery to check the fish, but quickly runs back to me and we keep rolling. We come across a couple of girls and their mom from town with a jog stroller. We run with them on the long hill on Mt Gardner. I keep saying “Sam, this is a big hill. Tell me if you want to walk a little while.” He says “No, my muscles are strong”. At one point I hear him mumbling to himself about how his muscles used to hurt but now they are strong and he can keep running because of the computer in his leg. I realize he’s talking about the timing chip around his ankle and chuckle.
We reach the ½ way water station and our neighbours Peg and Franny. They cheer us on. We stop and have a cup of water. Then, he just keeps running. When we leave the trails for Deep Bay, he grabs my hand and I suddenly realize that he is going to run the whole dang thing. We cross Miller road and there’s Jeff again. We run past Lyn who cheers even more excitedly. I yell back to her, “It must be the steroids”. As we approach the finish I say to Sam, “Do you want to go across the finish by yourself or together with mommy?” “Together” he says. And that’s what we did. We crossed the line together with enormous cheers from this amazing community and right into the arms of his dad who looks at me with shock and I say “he ran the whole way… honestly… he literally ran the whole way”.
Keelan Hondro took first place for boys under 7, finishing 20 seconds earlier than us. Next year, we’ll catch him.